There's a Light At the End of the Tunnel

I don't often go through the days thinking about the beginning of this journey with Wade. Every now and again, I'll see a picture or smell a scent that will jog my memory and make me stop for a minute. There are certain things that will immediately take me back to the hospital. The sanitizing soap they used in the NICU is a very powerful trigger. When I smell it, my stomach automatically flips. I still can't drive downtown around Cook Children's without my heart pumping just a little bit faster. But for the most part, I focus on the present and all the strides Wade has made. However, the past couple of weeks have caused me to relive some of those very terrifying and heartbreaking moments.

Some friends/neighbors of ours had a beautiful baby boy on January 19. Cooper was having some issues with feeding and twitching, so he was admitted to the NICU. The past three weeks have been a roller coaster of emotions for this family. There have been some answers, wrong answers, no answers, partial answers, and mainly just confusion. There have been tests that have come back positive, some negative, some borderline. Again, just confusion. Yes it's genetic. No it's not genetic. It might be genetic. Then, the worst news ever was delivered. The parents were told that if Cooper didn't get better soon, he would die. Although, if he did get better, his life would be short. As I read that text, I felt as if I had been punched in the gut. From what I understood to this point was that Cooper had hypotonia so severe that it would eventually make breathing too difficult. I told Curtis that I just couldn't even imagine...

Then, I stopped. Yes, I CAN imagine. We've been there, done that. We've walked in their shoes. Wade has cerebral palsy which fluctuates between high and low tone. Which is hyper and hypotonia. How can I even say that I can't imagine? The only reason I have is God. By the grace of God, He took the most tragic and horrific thing that has ever happened to me and turned it into the most wonderful blessing. In the process, He healed the pain, and He has helped me "forget" the sadness, loneliness, and fear. It took awhile, and I didn't even realize how much I had "forgotten" until I said, "I can't even imagine what they're going through."

I remember laying on the operating table wondering how I was going to go home without a baby. How was I going to tell everyone that I had been pregnant, but I didn't have a baby to show for it? I remember the sound of the resuscitator as they tried desperately to get Wade to breath. I remember the chaplain coming to talk to me, and I didn't want to see him because in the movies, when the chaplain comes, it's all over. I remember the hospital making an exception and letting the flight crew bring Wade in so I could at least see him before they boarded the helicopter. I remember the confusion in my OB's face when he told me he just didn't understand what had happened. I remember the staff not wanting to make eye contact with me. I remember my heart stopping whenever Curtis' phone would ring when we weren't at the hospital. I was so afraid it was going to be "that call"; the one where they told us he was gone. I remember being scared to enter the NICU because I was terrified that Wade wouldn't be in his bed. I remember praying that the MRI wouldn't show any brain damage but knowing in my heart that there was. I remember not being able to cry the moment the doctor told us the results because I did already know. I remember the neurologist telling us that Wade would never walk or talk and that he'd be in a wheelchair for the rest of his life. Then, one phone call changed it all. I remember vividly sitting on the ottoman in my living room, and Dr. Nedrelow called. He had been off for a few days. The first thing he said was, "I have one word for you. WOW! This is NOT the same baby I left a few days ago." In that moment, I knew that everything would be okay. Not what I had imagined, but there was finally a light at the end of the tunnel.

I've been praying for baby Cooper to have his "WOW" moment. Thank God there was an absolutely amazing update on Sunday. When Chris and Alison arrived at the hospital, Cooper was sitting in a bouncy seat awake. He had also woken during the middle of the night and seemed hungry. Some of his levels that had been high were coming down, and the sonogram of his diaphragm was normal!!!! At this point, it looks as if some of his "episodes" have been caused by aspiration from bottle feeds. The doctors are stumped. So, in my eyes, Cooper has had his "WOW" moment!!!! Please pray that Cooper continues to amaze everyone and fights to prove the doctors wrong. God is doing wondrous things with this small and fragile life. It just so happens that I came across this verse yesterday:

His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." John 9:2-3



None of us know the end of this story. God has a plan. But I pray with all my heart that God allows Cooper to continue healing so that he can grow up being a testament to Him. I also pray that the painful memories of this tragic situation begin to turn into blessings for this amazing and faithful family. I pray that they are able to see the light at the end of the tunnel. Please keep this family and baby Cooper in your thoughts and prayers.

The following song came on the radio on one of our trips back from Cooks. It became our theme song for our journey into the unknown with Wade. Hopefully it will offer some peace to Chris and Alison as well.


*Disclaimer: I did get permission from Alison to talk about Cooper's struggles. I didn't want to go into too much detail because it's not my story to share. But, I wanted to write about him so that others can pray for this precious baby. And of course, the story hits a little close to home. I wake up in the middle of the night thinking about Cooper so I thought this might serve as an outlet for my "forgotten" emotions as well.

Three Years Ago...

A new friend of mine sent me an email asking what happened during Wade's birth to require a helicopter ride to Cook Children's.  She didn't know if she had missed the info in my blog or if I never really wrote it.  I started this blog when Wade turned one in an effort to keep friends and family more up to date.  Since most of them knew what happened during the birth, I guess I just failed to include that portion--a very important detail!!!--in my original postings.  Now that things have settled down (i.e. I've gotten used to my new life) I'm trying to branch out and meet more people who share our daily struggles.  As a result, I'm trying to blog more to again keep family and friends up to date, but to also educate, inform and share with others what our life is really like.  So, in honor of Wade's birthday, I thought I'd do a quick recap and actually include his birth story.

Three years ago today, we recieved the official news that Wade did indeed suffer brain damage from the lack of oxygen during his traumatic birth. I can still remember the day like it was yesterday...

Rewind to Monday, May 21, 2007.  Curtis and I spent the day watching TLC which included a few episodes of A Baby Story.  I vividly remember telling Curtis that I did not want a C-section (which happened in at least one of the episodes) and him saying, "We'll do whatever we need to do."  We left for Baylor Hosptial in Irving that evening where I was scheduled to be induced.  They were to start cervadil that night, and start the pitocin the following morning.  At the time, I was 41 weeks.  I really wanted things to happen naturally, but my parents were flying in that night and the doctor said if the baby wasn't here by Friday, he would induce anyway.  In an effort to not bore you with the details, I'll just say that things that night and into the early morning were pretty uneventful.  Unknowingly, I was already having contractions when I got to the hospital.  Throughout the night though, I could feel a lot more.  I was a little naive and told the nurse that I was going to do things naturally.  She quickly informed me that the hospital wasn't really "friendly" towards natural births as far as equipment and such.  I would be hooked up to the machine so I couldn't walk through my contractions.  There weren't any birthing balls, and I couldn't take a bath even though there was a huge tub in my room.  I guess I should've looked into all of this ahead of time, but since it was my first pregnancy, I was pretty clueless on this type of thing.  Tuesday morning after I showered, I consented to some pain meds, and the doctor eventually came in and talked me into an epidural telling me, "you don't need to be a hero."  So, they gave me an epidural, my left leg kicked out, and things were pretty easy.  I slept through pretty much everything. 

The nurses assumed I would progress slowly, but by noon, I was ready to push.  The room was cleared of visitors except for Curtis and my mom.  My mom, at the very last moment, decided to stay.  (Thank you God for those extra set of eyes and ears!!!!)  I couldn't feel anything, and I remember snoring between pushes.  (The whole reason I didn't want pain meds.  I wanted to be aware of everything.)  I also remember Curtis eating a sandwich between me pushing!  Then, all of a sudden the atmosphere in the room totally changed.  Even in my groggy state I knew things had gone down hill fast.  I had a nurse up on my bed, I heard C-section, I was crying, and they wheeled me out of that room through some double doors.  In the operating room they hurriedly removed my jewelry.  The anesthesiologist was at my head repeating over and over "This isn't good.  This isn't good."  Wade was born at 2:31PM.  I asked, "Why isn't my baby crying?"--I had watched enough episodes of The Baby Story to know that he should be crying by now.  The anesthesiologist said, "It's okay.  They just have their fingers in his mouth."  What?!?!  That didn't make me feel any better!  Then I could hear them counting and "bagging" him, so I knew he wasn't breathing.  I can remember thinking, how are we going to go home without a baby and tell everyone he didn't live?  At some point, they got him stable--his apgar's were 0/3/3--and I was wheeled to recovery.

While I was in recovery, the team was prepping Wade for a helicopter transport to Cook Children's.  Because of the type of trauma, he was a candidate for a new type of treatment--full body hypothermia, aka cooling blanket.  The only hospital in the area that had this treatment for transfer patients was Cooks.  The idea of the treatment was to drop the core body temperature down for 72 hours in an attempt to stop any further damage from occurring due to the loss of oxygen.  It could not reverse any damage that had already happened, but hopefully it would stop further damage.  Although the delivery hospital and Cooks are only about 45 minutes away from each other, since it was rush hour, they opted for the helicopter transport.  I did get to see Wade for just a few minutes before they flew him away.  I also got to touch his hand, and then I didn't see him for two and a half days as we were at separate hospitals.  Over the course of the next few days, I learned that Wade had gotten "stuck" in the birth canal and the doctor tried a forcep delivery multiple times with no success.  Since then, we have also learned that the pitocin was allegedly causing me to hyperstimulate, not giving Wade enough time to recover between the contractions.

I was discharged that Friday, May 25 and went straight to Cooks.  I was not able to hold my sweet boy because he was intubated and still on the cooling blanket and had wires hooked up everywhere.  That night we went back to the hospital so we could be there when they removed him from the blanket.  That was quite the experience because right at the end, the blanket busted and water flowed everywhere!

Friday the doctors were all very positive about his prognosis. The EEG wasn't showing anymore seizure activity, and he seemed to be doing well.  They were scheduling him for an MRI as soon as possible.  Saturday morning we took our time getting to the hospital.  Mom and Dad were also flying back to VA that afternoon.  To our surprise, when we got back to the hospital, Wade was being returned from getting the MRI.  The doctor told us he had the results.  I knew in my heart of hearts that things weren't okay before he even said anything.  I asked him, "Is it good or bad?"  Dr. Nedrelow replied, "It's not good."  He said he was very surprised at the results because everything else seemed to be okay.  I don't remember much after that except to ask him to come to the waiting room so he could tell both of our parents.  Dr. Nedrelow has the best bedside manner.  He was very comforting and let all of us ask all kinds of questions.  The neurologist however, was very matter of fact and gave us worse case scenario.  According to him, Wade would be in a wheelchair for the rest of his life.  He would not walk or talk.  The area of the brain that was damaged put him at high risk for cerebral palsy, mental retardation and epilepsy.  Because I am a special education teacher, I prayed everyday for God NOT to give me a child with special needs.  I remember sobbing this to Curtis after we all left the waiting room.  But God had different plans and knew what he was doing when he led me down the path to that career.  He was preparing me for May 22, 2007.

Wade was in the NICU for 16 days.  He wowed the doctors with his improvements.  Dr. Nedrelow was off for a few days, and when he returned he was in shock.  He called me and said, "I have one word for you.  WOW!  This is a different baby than the one I left a few days ago."  I said, "Of course he is.  He's on every prayer chain across the country!"

So, in the beginning, our outlook on things was very grim.  Now, three years later, I think Wade has surpassed all of their initial expectations.  What did I learn in the process?  That most doctors are very intelligent and knowledgeable in their field.  However, they don't know everything.  They cannot predict the future or the outcomes.  While I still value their opinions, I do not put them on pedestals as the end all, be all.  They are humans.  They make mistakes.  They are NOT God.  Only He knows what's in store for us.  And while it is a very emotional and tiring road, it is full of laughter, smiles, and most of all, miracles!

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."~Jeremiah 29:11